Amylou29 wrote: She said if she was me she would go to my GP and ask to be referred to a neurologist put my mind at rest. That was 6 weeks ago, I'm still twitching and my legs are sore and stiff daily especially the more I do, I don't know weather or not to make another appointment with my GP, I've been having slight cramps too. This is driving me mad, I want to know it is bfs but I want to trust what the professionals have told me. Any advice/ experiences would be a huge help. Xx

Reading between the lines ( ) this is causing you some distress. Irrespective of whether the concern is justified then it makes sense to do anything that would put your mind at rest. If you believe (and check that you do) that going down the GP/neurologist route is going to bring you some relief then you should definitely do it (definitely because of your anxiety, not because of your symptoms).

I know what you both mean about having piece of mind but on the other hand the waiting time will drive me mad, I might wait until after Xmas and then go back. What do you both think of my symptoms? I won't panic if you think I need to see a neurologist, I would just like your opinions as people who suffer from bfs. Thanks xx

I have just read all this since you first posted in August. I can honestly say you have asked all the questions that have gone off in my head and I have not asked. Thank you everyone for creating such a great thread!

Amy lou you are experiencing / feeling / worrying about the same things that I have. I have twitched in my knee and thigh for 4 months constantly. I have cramps in my legs from time to time. I have twitched in places I did not even know existed! You name it I've twitched there (apart from my tongue).

I really think you have bfs but you have to like others have said do what makes you feel better. My neuro did not even do a CT, MRI or EMG. He has gone purely on a clinical examination. And he's not just a general neuro. He's top of his tree in neuromuscular diseases and runs a MND clinic.

Try not to worry. If you think this thread has been going 4 months and you have shown no progression.

It's Christmas next week! I'm trying not to let my fears ruin things for me and you should try and do the same. Xx

Amylou29 wrote:I know what you both mean about having piece of mind but on the other hand the waiting time will drive me mad, I might wait until after Xmas and then go back. What do you both think of my symptoms? I won't panic if you think I need to see a neurologist, I would just like your opinions as people who suffer from bfs. Thanks xx

Obviously I'm not medically qualified but I don't see anything in your symptoms that isn't consistent with BFS (and , I'll say this quietly(!), I'm not all convinced that the BFS symptom list is as long as some suggest so that means I am even more certain of that statement). Your GP obviously thought the same (Are you in UK/US? Just to be sure we are talking about the same terms), did they do a basic neuro exam?

I do though think that this is causing you a great deal of emotional distress and you shouldn't have to go through that. My guess is you won't get a GP appointment this side of Christmas (I am in UK, may be different where you are) so try and put it out of your mind and have a great Christmas. After that think about trying to get a referral, but only to put your mind at rest (*seeing* a neurologist doesn't make this any more serious!).

I'm in the uk, the neuro physiotherapist gave me a full clinical exam and found slightly brisk reflexes in left knee but nothing that concerned her, she put my body in positions that according to her should make me twitch and it never, she felt some twitches though. I do trust my GP I'm just not sure how up to speed the are on bfs, he didn't seem to know too much about it.thank you for all of your advice it's so helpful xx

Amylou29 wrote:I'm in the uk, the neuro physiotherapist gave me a full clinical exam and found slightly brisk reflexes in left knee but nothing that concerned her, she put my body in positions that according to her should make me twitch and it never, she felt some twitches though. I do trust my GP I'm just not sure how up to speed the are on bfs, he didn't seem to know too much about it.thank you for all of your advice it's so helpful xx

Slightly brisk reflexes are completely normal for an anxious person. If they didn't see anything of concern in the exam then it sounds like you don't have any other neurological symptoms and don't have a lot to worry about.

They aren't up to speed on BFS because they don't care much. If you twitch and it is only twitching then who cares? The next person in the waiting room has cancer / had a stroke 3 months ago/ is suicidal etc. and that stuff they are definitely up to speed on.

Some good evidence (not one single cause for everyone though) that this is a somatic response to anxiety. Addressing that may well help with the twitches.

Hope you feel better soon and can relax over Christmas (<- to be politically correct 'holiday season' if you are Jewish/Muslim etc ).

to be politically correct 'holiday season' if you are Jewish/Muslim etc

or Ortodox ))

I am personally not but living in Ortodox country! thanks to messer Ugo Boncompagni knwn also as Pope Gregorius XIII, we celebrate for almost two weeks (from in fact late days of December till jan 7 which is Chrismas by Julian calendar at which Ortodox church still counts its days)

It would be great not to have this over the holiday season although I'm sure I will. The thing is I know I'm anxious about my health and I was very anxious when the twitching started but now I don't think I worry so much but still I'm continuously twitching. I can cope with the twitching but the stiffness is horrible. I've been prescribed amitriptyline but it makes me fall asleep. Is there any thing we can try to stop the twitching? RGB you have been a great help! Xx

Amylou29 wrote:It would be great not to have this over the holiday season although I'm sure I will. The thing is I know I'm anxious about my health and I was very anxious when the twitching started but now I don't think I worry so much but still I'm continuously twitching. I can cope with the twitching but the stiffness is horrible. I've been prescribed amitriptyline but it makes me fall asleep. Is there any thing we can try to stop the twitching? RGB you have been a great help! Xx

Was the amitriptyline for depression? Some people seem to be 'built' in such a way that psychological problems manifest as physical symptoms. Fasciculations may well be a physical response to anxiety and muscle stiffness is known to be common in people suffering from depression. It's not that these symptoms are 'in your head' (i.e. imagined), the muscle stiffness hurts just as much, it is just that the root cause is psychological.

So my only advice is to (a) Ignore the twitches as best you can because every thought about them just 'feeds' the anxiety and (b) Consider the possibility that your physical symptoms have a non-physical cause. If you think this may be true (and people are often reluctant to accept this) then focus your energies on looking after your mental health. Physical well-being may soon follow.

Amylou29 wrote:Yes you are right. Just one more quick question, as I have constant twitches in my legs daily are these classed as hot spot? Thanks again

Probably not the answer you are looking for (and I have been 'told off' before for a reply very similar to this!) but why does it matter? People with BFS twitch in all kinds of places in all kinds of ways, the details/names of which have almost no bearing on the diagnosis and most importantly the outcome (i.e. benign).

If I'm *forced* to give the other (less helpful!) answer then I think the term hot-spot refers to a more localised, persistent twitch (but I may be wrong).

I know it isn't easy (been there) and I know my message is always the same but TRY and enjoy Christmas... You twitch as do lots of other entirely healthy people. At best your anxiety won't help and at worst it may be the cause of the twitching.

Legs are the most common area from what I understand ... My calfs are like firework displays sometimes !! I think a hot spot is when the exact same muscle are twitches constantly ... So like you could put a coin on the spot that twitches ... A very precise spot...

My tongue tip was one... 14 weeks the exact same spot... My tricep is one ... Every few seconds 24/7 exact same spot for 6 weeks and counting...My chin was one although that was 4 years ago ... Lasted a few months...

I was also prescribed amitriptyline fir low back / sciatic nerve pain.. They gave me 10mg tablets but after week 1 I had to take 20mg then week 3 upto 30mg ...I woke up the morning after taking 20mg like a zombie slurred my speech etc so I freaked and stopped it as it took me longer to wake up !! I think they helped my nerve pain but as of tonight I am stopping ... I seen a chiropractor and physiotherapist so hopefully they can help with no meds !! The physio and chiro said my back was really tense all over !!

I'm not taking them at the minute as they made me feel really dopey! I was taking 30mg. The pain is strange, it's like muscle pain you get from exercise but without the exercise. Just from work or walking my dog the are sore and stiff. As I twitch in my legs constantly it does worry me as most peoples seem to move some where else or stop for a while.

I don't think it needs to move ... You've already got it in two legs... Like I said my tongue 14 ish weeks, tricep still at it constant !! So I have it focused too as well as moving ones !! My legs are constant too just all over ... Mostly calfs !! Don't worry amylou !